Cancer patient perspectives on survivorship goals from the Smart Patients online community.
Cancer patient perspectives on survivorship goals from the Smart Patients online community.
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DOI：
10.1007/s00520-020-05734-0
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发表时间：
2021-05
期刊：
影响因子：
--
通讯作者：
Sarkar U
中科院分区：
文献类型：
--
作者：
Hoskote M;Le G;Cherian R;Zeiger R;Sarkar U
癌症影响个人的生活目标。最近的癌症护理指南建议将讨论生活目标作为患者与提供者沟通的一部分。这项研究的目的是了解患者对与癌症护理提供者分享目标的态度。在名为“SmartPatient”的在线社交网络上，通过电子邮件向癌症患者和幸存者 (n=39) 进行了半结构化问卷调查。参与者回答了有关他们人生目标的开放式问题。然后，他们完成了一项关于他们对与医疗保健提供者分享目标的态度的调查。研究小组使用综合归纳演绎定性分析来确定概念主题。参与者列出了与改善身体活动、控制、享受/休闲和内在力量有关的目标，同时减少疼痛、焦虑、对复发的恐惧和不确定性。这些目标大多数是生活目标，而不是与医疗保健专门相关的目标。在所有目标中，重点都是恢复正常。我们的研究结果表明，87% 的参与者希望他们的癌症专家定期与他们讨论他们的治疗偏好和目标。然而，参与者不愿意与他们的提供者分享他们的目标。受访者认为，除了医疗之外，他们的提供者对他们的生活目标或解决这些问题的时间不感兴趣。尽管癌症患者与提供者沟通指南提倡围绕生活目标进行讨论，但本研究的参与者表示不愿意与提供者分享生活目标。进一步努力调整患者和提供者的期望可能有助于遵守有关生活目标的癌症沟通指南。癌症幸存者应该意识到，讨论人生目标是与癌症护理团队建议沟通的一部分。
Cancer impacts individuals’ life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients’ attitudes towards goal sharing with their cancer care providers. Semi-structured questionnaires were conducted via email with cancer patients and survivors (n=39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes towards goal sharing with health care providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength, while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.
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作者：
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